British Society for Haematology. Listening. Learning. Leading British Society for Haematology. Listening. Learning. Leading

In the following collection of short videos, Mary speaks to us about her experiences as a sickle cell patient. Here she details her experience of living with the disease, the care she has received and gives advice for clinicians treating patients with SCD.


 

1) What does it actually feel like to experience pain in sickle cell disease?  In the first of a collection of videos, Mary shares how many ways pain can affect her life, including crises in public places, emergency service misunderstandings and her daily journey to work.

2) "I can't stick up for myself too much because then they see me as a difficult person, and with that they can make the decision not to help me further". Mary shares experiences of uncompassionate care, and how it feels to be viewed with suspicion when in pain.

3) Mary recollects her childhood experiences of sickle cell disease, including the frustration of seeming normal on the outside, but being the only teenager who was stopped from joining in with the activities of her friends.

4) How can we improve care for patients with sickle cell disease? Mary shares her recommendations on training healthcare staff, supporting parents and the need for wider education: "If people are educated more, sickle cell patients will suffer less".

5) Mary highlights her most important point: to remember you are meeting an individual human personality and not just a "sickle cell patient".